00:00 Maddie: Hi and welcome to another episode of Talking Transplant, the podcast all about organ and tissue donation. My name is Maddie and I'll be your host for today.

00:13 Kalina: Wunmanidje. Hello, how are you? My name is Kalina Harris Ne Pepper. I'm a proud Gunaikurnai, Wotjobaluk woman. I'm one of Austin Health's Aboriginal Health Liaison Officers. I would like to respectfully acknowledge and honour, in connection and harmony, the Wurundjeri people and their country on which I live, work, and where we meet here today. I ask everyone to do the same, to respect and care for the land. I would like to pay my respects to our elders, past, present, and emerging."

And I'd also like to finish by honouring my ancestors and my mother Earth for always connecting me to my deep inner knowing, love and guidance. Yarrabee, farewell and travel safe.

00:52 Maddie: Have you ever thought about giving an organ to a family member to save their life? What about donating to a complete stranger just for the greater good? On today's episode, I'm joined by Steve Liston. Steve has no experience of kidney disease in his family, but last year chose to donate his kidney to save a stranger's life. Welcome, Steve.

01:11 Steve: Maddy, thank you very much for the invitation.

01:12 Maddie: You'll also hear from Doctor Darren Lee, one of our transplant nephrologists, who will talk about this type of donation and how the kidney exchange works. Thanks for joining us today, Darren

01:21 Darren: Thank you for inviting me today, Maddie.

01:23 Maddie: Steve, you've had a long history of donating blood and doing what you can for the community. When did that interest first start?

01:32 Steve: When I was 16, I was a Rotary Youth Exchange student. And so a part of that was being involved with Rotary clubs in Australia before going in Japan, while I was there and then back. So, I was exposed to people working locally, nationally and internationally for helping other people. And that was probably where I first started becoming involved myself.

01:55 Maddie: And how do you go from donating blood to donating a kidney?

02:00 Steve: It started with listening to a radio program while I was in Japan, and it spoke of someone who started a chain in Europe. And that concept of one person not making a substantial difference to the life of another, but to be a part of a team that makes a monumental difference to the life of a lot of people really struck a chord. 

You can do a lot of charitable goods that have marginal benefit. You can invest a lot of time and money that has no benefit whatsoever. Whereas an organ transplant is direct. Now, blood donation, plasma donation, bone marrow donor registry, deceased, organ donation, all have a huge benefit. But this one, that just planted a seed.

02:52 Just listening to that interview, I recall the interview. I was driving, I was in Tokyo, might have been three tiers of just, “Wow, what just struck home.” Post-donation, there's a really fine line between not wanting to be seen to be blowing your own horn, but also to be promoting it, because there's not a huge percentage of the population that will choose to go down this path.

03:16 Maddie: So that interview that you listened to was 20 years ago. At what point a couple of years ago, when this process started, did you say, now's the time? What flicked in your brain?

03:26 Steve: It was about 2008. I initially thought about doing it and sat down with the family. At that time it was not right. Self-employed, young children, not appropriate. The idea is still ticking around in the back of the mind. For me, one of the catalysts was I lost my driver's licence over macular degeneration, it's an eyesight condition. And you then become dependent on people, and so you look for a way of, right, what else can I do?

Or what can I do for me, for my self-worth, for my sense of value? And so I revisited this option. The decision to donate isn't a binary decision. It's a long process, and you go into it with the understanding that you can be knocked out at any stage. And so it's not like I'm gonna do it, and you lie down and they whip it out. I'm thinking of doing it, right, well, let's start the screening.

04:29 Maddie: So you've decided, "Okay, I'm moving forward with this." What did you do next to get that ball rolling?

04:34 Steve: First step was consultation with my GP and as I expect the case would be with most GPs, they had never had anything to do with a live donation just because the numbers of people doing it was so low. He then just looked up and gave me a website to jump onto and that then started the ball rolling for what turned out to be, in my case, two and a half years of testing and waiting and checks that led to the final surgery.

05:04 Maddie: So, like you said, something like this doesn't happen overnight and it can often take a number of years. Darren, when someone approaches you or you get someone referred to you who says, "I want to donate to a stranger, I don't know anyone who needs this but I just want to help." What does that process look like for you on your end? Does it raise any red flags or what do you do next?

05:25 Darren: Yeah, so the process is actually quite similar to people who would like to donate to their friends or relatives directly. So, basically it started with a lot of information and education and try to understand how much they have already received and thought through. In Steve's case, obviously, he was very well informed before even starting this process, but that's not always the case. 

So, that they can make an informed decision, and then that's followed by heaps of tests, as Steve has mentioned. So blood tests, urine tests, X rays, ultrasound, nuclear scan, CT scan, you name it, and then assessed by also quite detailed manner by kidney specialists. In this case, Steve was seeing one of my colleagues at Eastern Health, and also psychologists and psychiatrists.

06:22 And as Steve mentioned, one of the reasons sometimes it could take a long time is because along the way you find something that would need more detailed assessment, and so that would involve more tests and more thesis and referrals to other specialists. And at the end of that, we want to do the best we can to make sure that it is reasonably low risk for Steve to have a major operation and it's unlikely going to harm him in any major way, physically and psychosocially. But usually the decision is not clear-cut. It's not like yes or no, it is quite a bit of shared decision-making at the end.

06:59 Maddie: What was that process like for you, Steve, over the past two and a half years?

07:02 Steve: Thorough, cautious, and it took a long time, deliberately so, in my case, because it's not a direct donation, there's like an extra level of care, because there's no direct. Sorry, it's perceived there's no direct benefit, because for me, I believe there is a benefit. But in my case, I had to lose ten kilograms. I was obese, according to the BMI scale. And the day that I walked in, twelve months later and sat down with Matthew and said, "Okay, I've lost the ten kilograms", there was almost a palpable change in the room. 

Because the losing of the weight is often something that prevents people from getting through and by making the process fairly long, you're actually also filtering out anybody who's thought, gee, that's a good idea, but hasn't really committed to it or hasn't fully internalised the concept because it's... 

07:59 Maddie: It's a big thing.

08:00 Steve: It is, not just for you, but for everyone involved. I mean, it's a wonderful, wonderful way to have an incredibly thorough set of medical tests on yourself.

08:08 Maddie: Did you at any point over that two and a half years have a moment where you're like, "Oh, this is just a bit much?"

08:15 Steve: No, I didn't post surgery for 30 seconds. I thought, gee, what have I done? And then I just thought because I'd done so much research and had faith in the people around me, it didn't bother me. At no point did I think, "No, I've made a bad choice."

08:35 Maddie: So, we've touched on this a little bit. But, you know, most organ donations, like yours, where you're donating a kidney, swaps between relatives or people that someone might know. But with non-directed, altruistic donations like yours, Steve, it can go to anyone who is essentially a match. 

And to get a kidney, you need to give one back. So, you set off a chain of other donations around the country and in New Zealand as well. So, Austin Health is one of the biggest users of this programme, which is the Australian and New Zealand paired kidney Exchange, which is what you'll kidney went into. Darren, can you talk a little bit about what that programme is to people who might be listening and have no idea what we're talking about?

09:12 Darren: Okay, so originally it was set up and was designed to help those living donor pairs. So you've got a donor who's willing to donate to someone they know, but happen not to be compatible. So, at the start it was just a simple two way swap. So, you find two donor pairs where they're both incompatible and somehow if you do a swap, then both would be compatible and the transplant can proceed. 

But over time, what they found out was that those with very difficult matching, a lot of antibodies, it's just impossible to find that special donor. And they've done some more inventive things like basically trying to get more pairs into the programme.

09:56 So the bigger the pool, the more likely you're going to get a match. Someone like Steve, who is just so generous to give a kidney to a stranger, will open up a lot of opportunities to match someone. And then they also include a New Zealand to form an Australian and New Zealand Kidney Exchange Program that way, yes.

10:15 Maddie: Do we have many non-directed, altruistic donors like Steve?

10:19 Darren: No, not at all. And I think it's not surprising, because it is a big deal to give away kidney, particularly to a stranger. And Steve realises that he's done something quite remarkable. But at the same time, you don't actually sort of physically see that benefit. It makes it much harder. 

So, In Australia and New Zealand, in the last two years, they've only been about ten to eleven per year, and you would make up about 15% of all the donors in the exchange program. But when you think about just all living donors altogether, it's only about 3%.

11:00 But the remarkable thing is that it opens up a lot of opportunities in exchange program, but they actually account for 70% to 80% of all the transplants done through the exchange program. So, it makes a huge difference to have non-directed donors. Yes.

11:15 Maddie: So by all accounts, this seems like a great way to increase donations and shorten the waiting list for those who might be waiting. Why don't we do this more? And why is it not, you know, people might say, "Oh, surely we can just, you know, give them some money to increase that, why is that not possible?"

11:35 Darren: Yeah, I guess there are probably two levels to the answers for that question. So, first thing is the living kidney donors even just being assessed before kidney donation, we try to make it financially neutral to make sure they're not worse off. So, in Australia now you can apply and the government would subsidise the minimum wage level, which is not a lot, but still something for nine weeks. So about, I think, 342 hours of minimum wage rate even for the workout process. 

So, even if you don't get to donation, you are reimbursed in that sense. The reason not to make it financially incentivized thing to do is that it would tend to basically exacerbate the inequality for those being in the lower socioeconomic background because they also tend to have worse health outcomes. So we really do not want to do that. Yes.

12:36 Maddie: Steve, your donation set off a chain of more than ten. How does that make you feel?

12:43 Steve: Grateful. Humble. Happy. People work hard to generate income. That's not why they work hard. The income that they generate, they spend on something to give them a feeling. Food might make you feel good. Some people like experiences, some people like to gain assets. And this is what gives me that buzz. But it doesn't stop with me. 

Everyone in my family have now got a story that they share with their friends, people that I've shared the story with, it affects them, it changes them. It doesn't mean they're going to go and do it, but it makes them feel good, too. So, to be cliche, it's a feeling that money cannot buy.

13:26 Maddie: Have you spoken to your family and friends about signing up to be an organ donor? 

13:29 Steve: Yes, we have. And we've spoken about, obviously, deceased organ donation a fair bit.

13:36 Maddie: I assume you're on that list as well?

13:39 Steve: Oh, yeah, I've been on that for a long time. A very close friend who passed, her organs went to seven different people. And that was an amazing funeral, because suddenly we all knew that she was passionate about it. She died in a car accident, and that's a benefit that just flows on.

13:55 Maddie: So it's the day of surgery and you're being wheeled in or you're sitting in the hospital bed waiting to be wheeled in. How did you feel and did your mind, did you ever have a moment again then of, "Oh, my gosh, what am I about to do?"

14:08 Steve: The overriding feeling was of excitement, curiosity, because it's so rare that you go through those doors when you're on the trolley, you're looking around. I had an inner giggle. I just couldn't stop thinking about Monty Python going, "Quick, the administrator's coming, bring the machine that goes bing!"

14:25 Maddie: Darren, all surgeries have risks, even the simplest of ones. How dangerous or easy is a surgery like taking out a kidney?

14:35 Darren: I think we would say that it is a reasonably low-risk operation otherwise we wouldn't be I guess being paternalistic to agree to Steve doing such a noble thing. It is about one in 3000 to 4000 chance of dying in the first three months from such an operation so it is not a high-risk operation. 

But then at the same time when you're donating a kidney, having an operation not for your own health, but for someone else and even this time to a stranger it is much higher stake that we were talking about. It is about two to 3% chance of what we would call serious complications like heart attack, stroke, major bleeding problems, something similar like that to delay your hospital stay which is usually about three days of recovery within the hospital, yes. 

15:27 Maddie: We have two kidneys I would like to think for a reason. Steve now only has one. What are the health implications of only having one kidney now? 

15:35 Darren: There is a small increase in blood pressure generally and that might make a difference to Steve whether he needs a blood pressure medication or not during his lifetime because we want better blood pressure target to protect a single kidney and all his other organs and as you mentioned the reserve, he lost that. 

And it's not quite 50%, you lose the 50% but then your single kidney will work a bit harder being the only kidney working so you make up about 60% to 75% of the kidney function so hopefully the age-related decline will still not be any quicker than having two kidneys so by the time Steve is in his 80s and 90s, he would still have enough kidney function...

16:20 Steve: Can I just add on to what Darren was saying there? One of the changes post-donation is I monitor my blood pressure, I never did that before. And so I made some of the changes that are constantly recommended, reduce caffeine intake, reduce salts, sugars to physically reduce the blood pressure which again, you start becoming a lot more aware of your health, and I now have six month or annual checkups to keep an eye on things that would otherwise be an issue. So, in a sense, a kidney donor is often physically more inclined to take better care and be more aware of the state of their body.

17:05 Maddie: How else do you feel now, you're post-surgery, besides making those small lifestyle changes, how are you feeling?

17:12 Steve: Wonderful. Absolutely wonderful. Physically, I don't think there's anything that I can't do now that I could do before.

17:20 Maddie: You have a scar on your stomach or your tummy that acts as a daily reminder of what you've done, do you think about that often or think about that person who's benefited from that donation?

17:33 Steve: Every day, when I get out of the shower, I look at, there's four scars. Two of them I can't see anymore. I can feel them, I've got to look for them. The scar where the equipment went through, that's a deep-ish one. And the scar where the kidney came out from is quite long. Do I think of the person?

I don't know the gender, I don't know the race, I don't know the age, I don't know the religion. I think more about it in a general term than an individual term. But every single day when I get out of the shower, I'm reminded, I think about it and I start the day with a smile.

18:10 Maddie: If someone's listening who hasn't signed up yet to be an organ donor or hasn't had a conversation yet with their family, what would you say to them?

18:17 Steve: Don't have the conversation with your family until you've done a bit of reading and research yourself, because once you let that bull out of the gate, people will be asking you questions. And if you haven't thought about it and internalised your answers and your responses, you can potentially then be persuaded through a lack of knowledge on their behalf or on your behalf. 

However, once you're aware of what Darren was just talking about with the risks, and you're happy with those risks, then you're in a position to actually speak to people and the people in your life will be afraid for your health because they love you, and if you can relay their fears, you're in a much better position to start the conversation then. 

19:06 And that's also an important factor for recipients to understand, too. There are times when a recipient is reluctant to take a kidney from a close family member for fear of the effect on them, and so anything that can be done to provide the information flow about the positives and negatives for a balanced, informed, educated conversation is a bonus.

19:27 Maddie: Have you been able to donate blood since your donation?

19:30 Steve: Yep. 

19:31 Maddie: And you'll continue that?

19:33 Steve: Absolutely. Absolutely.

19:34 Maddie: Do you know how many donations you're at, out of curiosity?

19:38 Steve: Mid-sixties, which is not a copious amount compared to other people.

19:42 Maddie: Still substantial, though.

19:44 Steve: Yeah. It's, you know, I'm on the bone marrow donor registry. That's a one in a million chance of getting the phone call. They say, you know, each, each blood donation goes to assist three potential people. But again, it's a wonderful process you go through. You sit down in a room with like-minded people, get a party, pie at the end. 

20:03 Maddie: Get a snack.

20:05 Steve: And everyone there is lovely. It's a great environment to be.

20:08 Maddie: Darren, what would you say to someone who's on the fence about wanting to donate? 

20:13 Darren: I guess the first thing to say is kidney donation saves lives. And in Steve's case, as a non-directed donating exchange program, he mentioned he, you know, saved one person's life. But that's actually not just one person because without Steve, it wouldn't have set off a chain of reaction, if you like, to multiple payers downstream. So, it's not just one person. 

And even with direct donation, the benefit to others would be that that would save an extra kidney from being used from the waiting list. So, another person could benefit. And living kidney donation with a transplant usually would do better than deceased donor transplant. And they don't need to wait on dialysis. And from the perspective of being an organ donor like Steve mentioned on the registry, it would also save many lives 'cause it's not just one kidney.

21:05 Maddie: I think that's all we have time for today. Thank you both so much for joining me and being so generous with your time and your stories. I'm sure, hopefully a lot of people will listen to this and then sign up. So thank you.

21:17 Steve: Thank you, Maddie.

21:18 Darren: Thank you, Maddie.

21:21 Maddie: If you liked today's episode, please jump on and listen to our other episodes. We have so many that are jam-packed with advice and tools and generally just great information. And most importantly, if you haven't done so already, please sign up and join the organ donor registry. Please visit donatelife.gov.au and help save a life. We've included a link in our show notes to everything we've mentioned today and where you can find out more.